Anniversaries and a Cure

devarah's picture

Today was my eighth anniversary with HIV. I was diagnosed in a small town doctor’s office, all alone and terrified, eight years ago today.

It was the first time that I don’t remember crying when the day started or when it ended. It’s been a long eight years – filled with life changes that I never could have foreseen at 21.  I’ve had to learn how to fight for myself and my rights, to stand up nationally and internationally, to proclaim who I am proudly and demand the equality that is all of our birthrights.

When this journey started for me in 2005, I was lost, scared, and filled with the unerring conviction that I would be dead within three years. I never imagined that I’d see 2008, let alone 2013.  I was so misinformed about what it meant to be HIV+ in the new millennium – it remains a sad statement on the effectiveness of our outreach to young people that so many of us are uneducated about the virus. I didn’t know anything about the medicines available, nor did I understand how being poz would change my life’s course.

But it seems that time and life are the great equalizers and I find myself on the cusp of 30, and nearing a whole decade of living with this virus, and I’m feeling remarkably okay with it. I’m still nowhere near where I want to be in my life – everyday is still a struggle to deal with the overwhelming magnitude of the issues that plague my mind.

As a transwoman, there are so many situations that make me anxious, and sometimes knowing that I will have to deal with the reality of my serostatus is crushing.  People are downright cruel when they think you’re less than they are – and as a positive woman that is what society tells us we are.  And as a transwoman, the message is compounded even further to make us confused about having any self-worth at all.

When I woke up that morning eight years ago, I didn’t have any self-worth. I believed the lie that I had been fed everyday with my cereal and mindless television ads that said I was had no inherent value. I didn’t think that I was worth using a condom because if he said he loved me, then wasn’t that proof enough of his intentions? Weren’t his sincerely spoken, soft words in the middle of the night argument enough to let my guard down?

And they were, then.  But they’re not anymore.

I went to bed last night knowing the only cure we have is expensive, painful, and extremely experimental.  And I know that it’s not something that I will ever realistically have access to for many years, if ever.  But as I woke up to start my most hated day of the year, my Facebook feed was filled with hope of a cure.

The story of the young girl from Mississippi, that hotbed of Southern values both good and bad, whose fate may change the fate of the world, was finally being told.  The first thing I felt was an overwhelming joy that there are so many young people who may now be spared the lifelong commitment to medicines; that their mothers and fathers will be able to raise them to protect themselves from this virus, and in turn, to protect their own children from it someday.

I hope that this young woman’s life is marked with joys and happiness; that her successes become a symbol and reflection of what this epidemic can look like for the millions of us living with the virus around the world.  Yet I know the truth is her life will have struggles just like the rest of us, and the attention thrust upon her and her family at such a young age will be a tremendous burden to bear.

I used to not have any hope that a cure would be found for this virus, and especially when my HIV anniversary rolls around I begin to doubt that any progress is being made and think that nothing is changing.  But now I have hope that a cure will be found for me too … someday. But this amazing story has me enthralled with possibility – the possibility of a future without HIV.

And while today will always mark an extremely difficult day in my life, maybe next year my anniversary with HIV won’t be something I’m sad and anxious about – maybe it’ll be an event I celebrate as the day the first cure for the next generation was found. No matter what happens, I’ll be following this story closely. I’m sure the rest of the world will be too.

 

(submitted on 3/4/13)

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Comments

devarah's picture

I agree, Shanna, there's still so much we don't know about this case yet that it may be a bit premature to conclusively call her "cured," especially if there's confusion as to whether she was infected at all, whether in utero or at birth. Regardless, if a change in the current treatment modality approach used in her case can lower the rates of HIV infection in children born to positive mothers, then I'm thrilled and definitely filled with hope that even more research into this can provide fruitful results.

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Shanna Carson's picture

Skeptics believe that this story of the cure child is not conclusive. They say that the baby - although at high risk for contracting the virus from her mother - was not actually infected. This story shows no actual proof that the child was indeed born with HIV. On the other hand it mentions that the baby, being at high risk of infection, was placed on treatment even before laboratory investigations had been done. That being said, doctors agree that the child was most likely infected, so it's still a story of hope :)

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Majken's picture

You are the most amazing person I know, and I love you to bits! As always you write beautifully and leave me humbled by your strength. <3

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Marjan's picture

how impressive. For you to share your story with the world! I hope the next years they will find the right medicines to cure Hiv. For you I wish you can lead the life that you want and enjoy life!
! Hugs from Holland

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Nzukie's picture

This is my 19th year living with the virus,at the present moment I'm not taking any medication,my CD4 count is 700,I'm enjoying life to the fullest.
From Nzukie
South Africa

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